It has come to my attention that I have been neglecting to fill people in on my health, which was the whole purpose of this blog way back when. As I have said before, I just don't really feel like talking about it lately. Since you all have been so wonderful about sending me your thoughts and prayers, I need to let you know what is going on.
The chemo has significantly improved my health and our lives. Unfortunately, it wasn't the cure I was hoping for, as I am still going in for IVIg twice a month. The thing is, I am so much better that I am not complaining. For example, Monday morning, I took a bike ride with Thomas on the back of the bike- 5 miles! By that night I knew I needed to get in for treatment. So all week last week I was swimming almost a half a mile every day, and I was good- feeling good, able to be Mommy, cook dinner, do the laundry, be a good wife and keep my general level of insanity low :) Ohhh don't I sound so domesticated? That is pretty funny. Not at all how I would describe myself. Oh well I am pretty sure my life is way more than the textbook description of full time mom (definately a topic for later discussion- like anyone should have a textbook description of what it is to be everything to people other than yourself).
So I have a choice. Do I continue to live my life the way I want to- playing with the kids instead of napping, working out, going to the occasional party on a Friday night or a neighborhood happy hour on a Wednesday afternoon- or do I become overly cautious and constantly worried that the symptoms will come back and I will have to go back for more IVIg? Pretty clear choice to me. I am tired of being a sick person. Now since the chemo I don't have to be anymore. People are very fond of telling me not to overdo it. God Bless my parents and Jason.... they get it. They just say how proud they are of how I am doing and how exciting it is that I am swimming again. I am sure they are worried- they love me after all!!! They are just putting the positive out there for me. Everyone has been so supportive and I am so grateful. Please continue to think good thoughts for me and for my family. This disease isn't gone- but I am thrilled to have it not be the center of my life anymore.
The current plan: IVIg once every 2 weeks (30 grams- which is half of what I had been getting) and chemo every third month for one year. Chemo will likely continue for a year past that at every fourth month. All subject to change, of course. Life wouldn't be fun if we didn't have surprises. Just kidding.
So if you call and I am slurring, please don't be upset. Remember that I am living my life the way I want to now. I am no longer ruled by myasthenia gravis. Six months ago I had to park in the handicapped spots on the days I felt up to going to the store and then I had to go home and take a rest because I was so wiped out. I had to plan when I was going to take a shower to make sure I had enough strength to dry myself off and still be able to make a peanut butter and jelly for the kids. Now my biggest concern is if I swim too hard, will I be slurring later. God has given me a gift- a new lease on life, and the perspective to truly enjoy all that I have and all that I am able to do.
The chemo has significantly improved my health and our lives. Unfortunately, it wasn't the cure I was hoping for, as I am still going in for IVIg twice a month. The thing is, I am so much better that I am not complaining. For example, Monday morning, I took a bike ride with Thomas on the back of the bike- 5 miles! By that night I knew I needed to get in for treatment. So all week last week I was swimming almost a half a mile every day, and I was good- feeling good, able to be Mommy, cook dinner, do the laundry, be a good wife and keep my general level of insanity low :) Ohhh don't I sound so domesticated? That is pretty funny. Not at all how I would describe myself. Oh well I am pretty sure my life is way more than the textbook description of full time mom (definately a topic for later discussion- like anyone should have a textbook description of what it is to be everything to people other than yourself).
So I have a choice. Do I continue to live my life the way I want to- playing with the kids instead of napping, working out, going to the occasional party on a Friday night or a neighborhood happy hour on a Wednesday afternoon- or do I become overly cautious and constantly worried that the symptoms will come back and I will have to go back for more IVIg? Pretty clear choice to me. I am tired of being a sick person. Now since the chemo I don't have to be anymore. People are very fond of telling me not to overdo it. God Bless my parents and Jason.... they get it. They just say how proud they are of how I am doing and how exciting it is that I am swimming again. I am sure they are worried- they love me after all!!! They are just putting the positive out there for me. Everyone has been so supportive and I am so grateful. Please continue to think good thoughts for me and for my family. This disease isn't gone- but I am thrilled to have it not be the center of my life anymore.
The current plan: IVIg once every 2 weeks (30 grams- which is half of what I had been getting) and chemo every third month for one year. Chemo will likely continue for a year past that at every fourth month. All subject to change, of course. Life wouldn't be fun if we didn't have surprises. Just kidding.
So if you call and I am slurring, please don't be upset. Remember that I am living my life the way I want to now. I am no longer ruled by myasthenia gravis. Six months ago I had to park in the handicapped spots on the days I felt up to going to the store and then I had to go home and take a rest because I was so wiped out. I had to plan when I was going to take a shower to make sure I had enough strength to dry myself off and still be able to make a peanut butter and jelly for the kids. Now my biggest concern is if I swim too hard, will I be slurring later. God has given me a gift- a new lease on life, and the perspective to truly enjoy all that I have and all that I am able to do.
1 comment:
So happy for you and your family, Claire! You keep on kicking the you know what out of the MG & lovin that beautiful family of yours :-)
Just keep swimming, just keep swimming...
Hugs,
M & ALL the boys
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